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Tuesday, 7 May 2013

The value of involving patients and the public in research

After working for two years as a researcher in the Evaluation, Research and Development Unit at Durham, I began my PhD in January. My PhD examines the effects of social context on symptom appraisal and help-seeking behaviour among patients with symptoms suggesting lung or colorectal cancer. Specifically I'm comparing the accounts of patients who have relatively short help-seeking intervals and patients who have a longer time to presentation. Over the past few years I have been lucky enough to attend a number of seminars which touched upon, or discussed in detail, the importance of patient and public involvement (PPI) in research. I always agreed with the value of public involvement and was sure I wanted to incorporate it into my PhD but arguably viewed it in a ‘rose-tinted spectacles’ type of way - not really understanding it’s potential.

I tried to recruit some patients for a bit of PPI two months before my ethics application was due but with two weeks to go I still had no-one. My previous passion about patient involvement became more of a fear of not having that ‘box ticked’. A few days later I had got two lay representatives who were interested in being involved, Simon*, a local patient, and Penny*, a patient rep on another study I work on. I sent the documents off (after a terrible explanation of patient involvement in research during the call to Simon) and felt relief that that it was coming together and I had ‘ticked the PPI box’.

After a few days I got a phone call from Simon, and then a couple of days later one from Penny too. I received a comment about the absence of a question on the national bowel screening programme in my interview schedule, something so obvious considering I had worked on a study looking at the barriers to participation in FOBT screening. The title on the study documents (‘Understanding Factors Affecting Help-Seeking’) was heavily critiqued, and rightly so, it was complete jargon and obviously intimidating. So we co-created a new title of ‘A study about what makes people decide to go to their doctor.’ There were a number of other issues raised but I also received a lot of support and praise for other aspects of the study design which boosted my confidence and belief that the research is valuable.

During these conversations I was listening more as a ‘person’ and less as a ‘researcher’ and agreeing – nothing either Simon or Penny said did I disagree with. Reflecting on these conversations made me realise that as researchers, it is very easy to remain firmly seated within our academic bubbles, using our exclusive languages and assuming people understand our implications without explaining them. If we took a more detached look at our research we would be able to see many of these issues ourselves. But too often we become wrapped up in our work. It gets difficult to see the wood for the trees and even harder to take a truly critical look at our ‘babies’. This is why PPI is so valuable, and should be a central part of our research approach.

Most of us in research do what we do because we believe in it and hope that someday our work may make even make the tiniest bit of difference to someone, somewhere. To help us achieve this we need to have good, representative recruitment rates, and to achieve this we need to make participation accessible and interesting.

I can't thank Simon and Penny enough for their input into my study so far. Not only have they improved the quality of the application and study documents, I believe their input will have improved recruitment to the study. Most importantly though, they kicked me out of my academic bubble, and made me think about the study as my lay self, and not my researcher self.

At this point in the study I don’t have any real pearls of wisdom to share. All I can say is please ‘go there’ and don’t just treat PPI as token gesture. I have found that embracing the lay representatives’ input has significantly benefited my study and I am excited to see how Simon and Penny will help to shape the study as it progresses.

Has anyone else had much experience with patient involvement in their research? I would love to hear your stories.

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